https://www.bonfire.com/noah-and-lawsons-strength160/
Welcome to NOAH and LAWSON'S STRENGTH Fundraising for STXBP1!!!
FIRST THANK YOU THANK YOU FOR COMING TO OUR PAGE.
Noah came to live with me when he was 10 months old ( I'm their step grandmother. Their grandfather passed in 2017 before Noah was thought about but long story short I have his oldest brother.) When we got him he couldn't sit up on his own, hold a bottle, roll over and was under weight. We knew he was born with drugs in his system, but did that explain it? So to my FAVORITE pediatric doctor, DR Eric Tyler we go. Dr Tyler had been so much help with Noah's older brother with diagnoses and getting us to another Dr if he didn't know. My trust in him was complete. BEFORE his appointment the next day he had his first seziure talk about freaking out! I was thinking what did I get into. Lawson has focal seziures but not the body convulsing, vomiting afterward seziures. Dr Tyler says, "Dana we know Lawson has the extra long arm on #18 and Autism along with all the acronyms that go with it. Maybe we need to go ahead a set up Noah with neurology at Children's. We got in quicker than expected and a chromosomal array was run. Ironically he and his brother have the exact down to the q. Extra long arm on #18 but Lawson was some delayed but not severe like this. The neurological geneticist was next and a gnome test was done there they found STXBP1 with epilepsy. They tested his brother since the other was identical and he's only got a deletion of half a gene. Good right? But what is this?? Well not alot is know about this genetic disorder only then 758 world wide. If you don't know who does? The genetic counselor stepped in and gave me links to Facebook groups and said you'll learn more there than anywhere. Parents are teaching us. So there and internet I went they were right the groups took me in and helped me so much, a stranger and welcomed me. Now I teach our doctors.
By the age of 2 we had a crawler after being in therapy since 11 months PT, OT and SPEECH 2 times a week. One was at physical fitness part of our hospital and the other 1 was in home. They said he was about a year behind mentally and in development. The next words where probably what maybe my heart drop to my waist "Mimi he may never walk we need to prepare for that." My answer is simple we will one way or another at 3 years and 3 months he took his first steps at 4 1/2 he's still wobbly but he WALKS. Now will he talk, they aren't to sure but they didn't think he'd walk either. Will he feed himself with utensils one day? We work on it and hopefully will hit that to.
It's slow going but IMAGINE for a minute if we raised enough money to push research even farther than imaginable and find a CURE for this RARE genetic disorder. Have Noah and Lawson's Strength BELIEVE and PUSH we can do GREAT THINGS!!!
Thank you in advance for your generous donation to the STXBP1 Foundation, we are thrilled to have you join Noah and Lawson. Your donation and participation means the world to us and the entire STXBP1 community! Donations directly fund critical research for treatments, therapies, and a cure for STXBP1 disorders.
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